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Dancing With Dementia

I studied ballet for fifteen years and, for me, a trained dancer’s body responding to music is one of the most powerful communicators of emotion, often transcending words.

So I was fascinated to hear about a professional dance theatre project inspired by people living with young onset dementia and their families and funded by the Arts Council of England. The collaborative work, led by choreographer and dance movement psychotherapist Beatrice Allegranti, aims to confront the taboos of loss, hope and intimacy so often found swirling around dementia. She explained how it evolved from conversations with families affected by dementia, both those who have it and their relatives – conducted in their own homes.

Beatrice listened and observed during the sessions, noticing moments and what she calls, “vignettes”, when those with dementia and their loved ones made certain movements or uttered words such as “I’m grabbing the time I have left”, “I’m like a baby” – or, from partners and adult children, “What is it to be human?”, “I hear your voice now”.

Beatrice and the professional dancers, all in their thirties, then co-choreographed bespoke pieces for each of the eight families which they performed for them, invited them to participate in and discussed with them, before blending parts of all eight into one work for public performance entitled, intriguingly, “I’ve Lost You Only To Discover That I Have Gone Missing”.

The result is an extraordinarily moving piece that somehow evokes dementia – what it is to have it, to live it, to see it in someone you love – in all its tangled complexity and rawness, with occasional moments of quite sublime tenderness. No mean feat.

I watched the small company rehearse on a gloomy Monday morning in a portacabin in south-west London. Despite the inauspicious surroundings, I was quickly transported to another world – because what I was seeing was that magical, creative combination of professionalism (in this case, first-class dancers with honed bodies and receptive minds) and personal, nuanced emotions, set to a haunting original score by composer Jill Halstead.

The piece opens with one of the female dancers picking up a pile of clothes and hugging it to her, smelling it, cherishing it – a simple, domestic task, gracefully imbued in this particular context with hints of intimacy and loss. As the dance unfolds dancers put on t-shirts and shoes, sometimes correctly, sometimes not, becoming stuck, confused, frustrated – frequently falling back, literally, into each others’ arms. Dementia played out, in front of my eyes and brought to life, with added poignancy, through human forms at the height of their physical prowess.

Aneta Zwierzynska & Takeshi MatsumotoPhoto Julia Testa

Afterwards dancer Luke Birch put into words what I realised I’d just seen. “I couldn’t start from that place of trying to pretend to be someone with dementia. That would feel patronising”.

So how on earth did the dancers do it? Italian-born Sabrina Gargano gave her view. “We don’t have dementia but the people (the families affected by the condition) they were witnesses and they came with us. That’s why it is so emotional, evocative and different every time: because we carry them with us”.

Her Japanese colleague Takeshi Matsumoto, 36, whose own father has young onset dementia, summed it up beautifully: “We dance with them”.

The idea of those with dementia and their families being part of the performance is crucial to the project. “We wanted to create dance, not just for an audience, but with an audience, with participants,” said Beatrice. She explained how her roles as dance therapist and choreographer overlap to ensure she provides a safe place for anyone involved in the process – whether families, dancers or herself – to be touched and affected by issues such as loss, fragmentation and care.

Photo Julia Testa

She’s succeeded. I spoke to some of the participating families and a recurrent theme was how the project had broken down barriers and forged connections.

Chrissie Fullbrook whose 67-year-old husband Charles has a rare form of dementia (Posterior Cortical Atrophy) told me that there was a great togetherness about dancing which was very special because people with dementia often become so solitary. “With very few words people can grow together, move together, hold hands, touch, laugh and heal”.

Zaki Shah lives in Morden with his mum Forhat Rahman who was diagnosed with Frontal Temporal Dementia a year ago aged just 54. Having grown up in a home full of books, he explained that his mum’s semantic dementia had largely robbed them of verbal communication, but now dance and movement have provided an important “beautiful and cathartic” new way for him and his mum to connect. He said the presence of professional dancers who are comfortable in their own bodies and able to read the nuances of other people’s body language, enabled his mum to join in.

And there is a wonderful reciprocity at play. Maria Olga Palliani (another Italian-born dancer) said, “They (the families living with dementia) get so much from us but we get so much from them”. She explained how she listened to what was said and then brought her own experiences to bear in her dancing.

Luke Birth & Takeshi MatsumotoPhoto Julia Testa

Like Maria, Sabrina said she has learnt and gained from the project. Normally, she explained, performances leave her drained but with this work, the reverse is true. “The more I do, the more I feel nourished. I am giving something – dancing – but I receive as well. Because it is personal and touching, and the people with dementia are present, it is a real and honest exchange”.

Barbara Stephens, chief executive of Dementia Pathfinders, one of the project’s advisors, has 29 years’ experience of working in the dementia field. She told me the bespoke participatory dances captured deeply felt emotions and the changing dynamics and tensions of relationships. “Words were not needed. The dances spoke for themselves”.

And that, I suppose, is where the magic lies. As soon as I heard about a project combining dance – using professional dancers trained in how to communicate emotions through choreographed movement – with dementia, a condition that so often robs people of speech (and is itself notoriously misunderstood), I knew I was onto a winner.

Dance has always had the power to speak straight to me, bypassing words and clever phrases to lodge in my brain and pierce my heart. How fitting then, that Beatrice and her team should choose to interact with, and be informed by, those whose emotions are raw and heightened even as words fail them and the world becomes a tangled and confusing place – I’m talking about both those with dementia and their families here.

I would urge anyone with even the slightest interest in dementia to go along to a performance because what you’ll see is about the ties that link and sustain us, verbal or not. It’s about what it is to be human, and surely we all have a stake in that.

*****

2018 Dates:

Friday 23 February: participatory dance research workshop in collaboration with Created Out of Mind at the Wellcome Collection – for people living with young onset dementia and their families only. Specialist neuro-psychological techniques, using cameras, will capture micro human movement not immediately noticeable to the human eye. Apply for participation via email: beatriceallegrantidancetheatre@gmail.com

Wednesday 23 & Thursday 24 May:Bergen International Festival, Norway. Premier of hour long version of ‘I’ve Lost You Only To Discover That I Have Gone Missing’ plus a participatory dance in a Bergen care home for people living with dementia

June 2018 – May 2019: monthly participatory dances for people living with young onset dementia and their families at Alexandra Palace and Merton Arts Space. Inquiries: beatriceallegrantidancetheatre@gmail.com

Thanks for sharing this Pippa. I’ll visit the website. Hopefully a tour might cover different areas of the country. The more I learn about dementia and pastimes/passions with which we have an emotional response, the more I understand about how we can connect more effectively with each other.